Thursday, February 2, 2012

ONE YEAR LATER...

Today marks the one-year anniversary of Trevor’s second brain injury, which is a rather bittersweet feeling.

When Trevor and I were about ten or 11 years old, our mom and stepdad decided to put the house on the market. We searched for months trying to find a place that was just right for our peculiar little family that had no idea what we wanted. We unsuccessfully toured all sorts of houses, from country to contemporary, tiny to huge, trying to picture ourselves in them. For about a year, Sundays consisted of Walker driving us around, looking at houses and ending up lost, bored and pissed off.

Finally, we came across our dream home, which happened to be an old, 5,000 square foot fix-me-up “mansion” in an old money neighborhood of Kalamazoo. It was built for an anesthesiologist by Glas Builders, one of the richest builders in the area. It had a boardwalk up to the big lead-glass front door and a massive spiral staircase that went all the way from the basement living room up to the fourth floor office. The house was floored with a thick puke-green shag carpet that Trevor and I would rather die than ever think about replacing. In the foyer was an enormous celebrity-sized chandelier which convinced us the house was a mansion.

What I remember most about the house were the amazing amounts of hiding spots. Trevor and I would spend hours and hours playing hide-n-seek while our parents penciled out the logistics of investing in this home. In our young naive minds, the house was ours. We hadn’t a doubt in our minds that we would soon be living there so we ran around and caused ruckus like we owned the place. We called dibs on bedrooms, explored every custom Scandinavian wood cabinet and even decided where our belongings would go. We had our very own Broadway shows on the basement stage and tore up the backyard woods. My mom named our soon-to-be home the “Shackalacka.” Walker told us we could build Trevor a mini-ramp for skateboarding and me a fence for the miniature pony they would soon buy.

It wasn’t until we broke a basement window, got yelled at by the realtor and found out our parents’ offer was declined that we realized our reality was shattered. We were absolutely devastated having to say goodbye to the house of our dreams. The Shackalacka marked the beginning of our over-used family mantra, “believe it when you see it.”

Exactly one year ago, I got the phone call saying Trevor was being airlifted to the University of Utah hospital. I was in utter disbelief, convincing myself I was in the middle of some horrible, drawn-out dream. When my mom told me Trevor had another accident, I didn’t believe her. When the doctors told me Trevor was in critical condition and was being rushed into emergency brain surgery, I didn’t believe them. The situation didn’t become reality until the moment I saw Trevor lying on that hospital bed, connected to a thousand wires and machines keeping him alive.

A year ago today, the doctors told us that if Trevor survived, it would be a long, long recovery. However, I don’t think any of us actually realized how long he meant. During Trevor’s first accident, the health professionals kept saying “this isn’t a sprint, it’s a marathon.” But they were wrong. His first recovery was a sprint; this one is proving to be the marathon!

Over the past year, Trevor has without a doubt improved drastically. He is what any doctor would call a medical miracle. Based on the CT scan of his brain, he shouldn’t even be alive but is getting better and better each day. The doctor said there was a good chance that if Trevor woke up from the coma he would be paralyzed for life, but he is gaining more feeling and movement on that right side. Although he still cannot move his right hand or foot at all, he is lifting his leg and arm up a little more each day. He is able to compensate with his strong side and walk with an obvious limp, but somehow manages to keep up with any of us.

The words are coming back as well, although still a significant struggle. If we point to a Subway sign and tell him to read it, he will probably say “Goodwill.” If we hold up a flashcard with a picture of a cat, he will probably say it’s a dishwasher. However, his responses are on point most of the time. If we ask him what’s up, he will say “boring” and if we ask what he’s doing, he’ll respond with “sit there, watch TV.” The communication of his wants and needs has improved tenfold over the past few months alone.

The Trevor personality we all know and love is all there. He still knows who all his friends are and gets really excited when they show up at the house. He still enjoys playing poker and going out to movies. Whenever we ask what he wants for dinner, he always says “shoo-shi.” He has a similar sense of humor and thinks farts are the most hilarious thing on the planet. He’s as confused as he’s ever been about whether he’s a hipster snowboarder or a redneck farmer, listening to both rap and country, wearing both Carhartt and Saga.

Although this may sound all hunky-dory, it has definitely been a hard year for all of us. We’ve been forced to put our plans on hold in order to care for Trevor. He’s still extremely dependent, screaming at us several times a day for help with simple tasks such as trimming his nails or turning off the TV. We all have nightmares about the possibility of a “third rodeo” and worry about seizures, which he seems to have every two months like clockwork. He’s extremely moody and stubborn, transitioning from laughing to screaming “shut up, whore” in a matter of seconds.

As far as a full recovery goes, “believe it when you see it” seems like the most appropriate attitude to have. Neither us nor the doctors have any idea whether or not he’s going to return to the Trevor we used to know. We don’t know how much time it’s going to take or where he’s going to end up. After his first accident, we were all ecstatic when he was practically back to normal after a few months. We thought the battle was over with, that he won, but we were wrong. I don’t think any of us ever imagined him being in this state again, especially a year later, but here we are. And all we know is that, like the doctor said, it’s going to be a long, long recovery.

However, Trevor’s dedication gives me hope that everything might eventually be okay. He wakes up every morning and goes to the gym for two hours to strengthen his weak arm and leg. He walks down the street and back three to four times a day. He goes to speech and occupational therapy five hours a day, twice a week. When he’s not watching Jersey Shore, The Titanic or Avatar, he’s in his room practicing speech with one of his Aphasia iPad apps. Trevor is always using “Siri” on his iPhone to help him read and respond to texts from his friends. He is adamant on the fact that he will be back to snowboarding (and drinking, which makes me want to throw up in my mouth) in just another year. If you ask him where he wants to go, he will say “Utah, one year” without hesitation. I’ve never seen anybody work as hard as he does to get better, which is truly inspiring.

Trevor is the man and even though sometimes I hate him for ruining plans and hogging all the attention, I am inexpressibly proud of his recovery. Keep on truckin’ Trev!

Friday, September 23, 2011

Yesterday, I was getting ready for work when I got a call from my mom. “Alyssa....” Oh god, not my name followed by that hesitant silence I was so familiar with. Something bad had obviously happened. “Trevor had a seizure. We’re in the ambulance on the way to Spectrum Hospital.”

Apparently while at my aunt’s surprise 50th birthday dinner party, before the surprise even took place, a lady came up and stuck her hand out to introduce herself to Trevor. He must have forgotten he can barely move his right arm and went to reach for hers when all of the sudden his arms stiffened, his eyes rolled to the back of his head and he began having a seizure. He started vomiting and twitching. The seizure lasted about 2-3 minutes and he was rushed to the hospital by ambulance.

When I got to the hospital about an hour later, besides looking a little tired and sweaty and wearing a gown, Trevor appeared perfectly normal. And by normal, I mean he was acting the same as he would have pre-seizure, lying there, calmly watching baseball on TV, not paying attention to anything around him.

At first, he seemed to be responding to questions just as he would before the seizure, with an unconfident “sure” or “alright.” My mom told him to say the alphabet and he repeated (with his kindergardener lisp), “one-two-three-four-five-six-seven-eight-nine-ten-‘leven-twelve-I don’t know.”

Then the phlebotomist came in and asked Trevor his date of birth. He quickly answered, “May 8, 1988,” which he’s never been able to repeat so well. He high-fived both of our little brothers when they entered the room. He told my dad, “Have to potty.” When I told him I loved him, he was able to repeat “Too” and then “I love you Alyssa too.”

At first, after the seizure, he was completely unable to move his right side. Later, he could lift it up a foot. This morning, he could lift it above his head, which he's never been able to do. It’s almost as if this seizure straightened something out in Trevor's brain, as if he’s somehow actually a little better now.

So yes, yesterday's episode was extremely scary and yes, we all thought Trevor was going to die, but apparently it wasn’t so bad after all. The CT scan and blood-work came out fine. His pupils were responsive and everything was normal. When we got home at 11:30 p.m., he seemed just a stubborn and ornery as usual, so everything must be alright. I think he was just, yet again, trying to be the center of attention. The little emergency room visit that brought the rest of us tears brought Trevor laughter.

Brain injury or not, Trevor will always be an asshole who enjoys keeping us on our toes all the time. The most terrifying thing to me is that we don’t know when his next seizure is going to be. According to the doctor, it could be in 10 minutes, 10 hours, 10 days or 10 years from now. He could never have one again in his entire life. But we don’t know...

Monday, September 12, 2011

Okay, so everyone in or near the Kalamazoo, Michigan area should try as hard as humanly possible to make it to this event for Trevor Rhoda. Whether you are a snowboarder or not and whether you know someone with a brain injury or not, it will be a good time.

It includes snowboard videos (one of Trevor himself), pro snowboarders, a TON of product, auctions and music by Show You Suck. There will be a $5 cover and all the profits will go to help pay Trevor's medical bills, etc. Show up at the Strutt on October 9th between 8pm and 12am. All ages are welcome. We're really excited about it so please help us make it as awesome as possible. If you have friends, invite them.

Huge, huge thanks to Tom Crowe, Tom Farrell and Joe Eichelberg for putting everything together making it happen!

Wednesday, August 24, 2011

Brain injuries are often called the “invisible injury” because unlike a broken bone, you cannot tell anything is wrong. By looking at Trevor, nobody would ever know what he’s been through. Nobody would know he’s had two traumatic brain injuries and has gone through six brain surgeries. Nobody would know he has the cognitive functioning of a toddler. To me, this is the scariest part. Trevor’s brain injury affects so many different aspects of his life besides the obvious physical struggles.

Until today, it’s been pretty hard to tell whether or not Trevor’s judgment, impulsivity or understanding are affected because his expression is so limited. I was actually in the middle of writing a post trying to explain where Trevor is at cognitively when I took a break to go golfing with Trevor, Payton and our friend Kolby. Just before teeing off, I said to Kolby, “It is so illegal to be letting Trevor drive this golf cart right now but whatever; he’ll be fine.” Boy was I wrong!

I’m pretty sure Trevor intentionally tried to kill our 11-year-old brother, Payton. On the first hole, Payton was walking to his ball when he looked back and saw Trevor directly behind him in the golf cart. Payton jokingly asked, “Trevor, are you trying to run me over?” and then all of the sudden I see Trevor ramming into Payton and Payton falling to the ground. I scream, “Stop, stop, stop!!” and see Trevor deliberately push the gas pedal further to the ground and run Payton over while looking at me, smiling.

Luckily, Payton came out with his entire back scraped up and raw but no broken bones or punctured organs. He was screaming bloody murder with adrenaline, Kolby and I were teared-up in panic and Trevor was sitting there in the driver’s seat of the golf cart like nothing had happened. On the way home, I tried to explain to him over and over again why what he did was wrong but he showed no emotion. He felt no remorse for nearly killing his younger brother and refused to say he was sorry. I kept asking him if he meant to do it and he would just smile, shrug his shoulders and continue looking out the window. When I told him this was a perfect example of why he could never get his driver’s license, he fought to find the words and then yelled “Shut up” with the lisp of a four year old.

I still can’t believe this happened, or remove the image in my head of Trevor smiling while running my little brother over. At this point, I’m not convinced he understands anything: life, sarcasm, jokes, questions, anything. His judgement is a lot more messed up than I thought.

Trevor’s frontal lobe is what took the hardest blow, which is what controls personality and emotional functioning. Clearly the golf cart incident proves that both of these things are a little out-of-whack. He is a stone wall when it comes to emotions. He is serious all the time, and doesn’t seem to get overly mad or happy about anything. He shows no interest in any of the things he was previously interested in, besides TV. He doesn’t want to go do anything; he would rather just “sit there”. Every now and again, he will give me the googly-eyes and laugh, but we’re half-convinced he thinks I’m his girlfriend. About a month ago, Trevor actually tried to kiss me, which has to be the hardest thing for me to take as his sister. While watching comedic movies, he will laugh every once in a while, but it never seems to be during parts that are meant to be funny.

His attention span and patience have both been seriously affected by his brain injury. He can only stand to do anything for 15 minutes tops. He cannot watch an entire TV show, cannot stay at the zoo for long enough to see the giraffes and cannot withstand the 45-minute trek to see the South Haven beach. If my mom doesn’t strap his foot correctly into the pedal of the recumbent bike at the gym, instead of waiting for her to figure it out, he gets mad and heads for the showers. If we go to a coffee shop and I cannot get the internet to work on his iPad, he stands up and walks toward my car.

As some of you know, communication is a huge struggle for Trevor, both verbal and nonverbal. This is because of the damage done to the parietal lobe of his brain. It’s nearly impossible for him to come up with the words to demonstrate his wants and needs. Honestly, he’s practically mute. He never tries to initiate conversation. He only responds when asked questions or prompted, sometimes with appropriate responses and more often not.

Trevor still can’t really read or write. On paper, he can copy most words but not groups of words or full sentences. On Facebook, he will respond to “what’s up?”, “how’s it goin?”, “thinking of you” or anything else with “heyyy.” I think everyone is convinced he’s totally fine because he can write on Facebook, but I’m pretty sure he’s clueless as to what anyone is actually saying. When I ask him if he needs help reading his text messages, he says “no.” When I ask him if he can read them, he also says “no.” Who knows what that means...

It’s common for people with traumatic brain injuries to be very dependent on schedules, and Trevor is no exception. He’s super impulsive and compulsive when it comes to daily routines. He does the weirdest, most meticulous things that make no sense to us, but to him they are completely normal. For instance, in the shower, he squirts a dollop of shampoo on his right leg and then scoops it up with his left arm to rub in his hair. Every time he showers.

Everything takes Trevor much longer than you or me, even the simplest of tasks. Yesterday, on the way home from a coffee shop, my gas gauge was well below “E.” Trevor pointed to my dash, pointed to a gas station on the right and said, “Go!” I told him I would only pull over if he filled my tank up and he agreed. He got out of my car, walked over to the gas pump and inserted my credit card into the receipt dispenser. I got out and pointed to where he was supposed to swipe it and he put it in the wrong way. I told him to turn the card around and it took him another few minutes to get right. Then, I told him to unscrew the gas lid. He walked over and kept touching my rear light, confused as to how to get the lid off. I pointed to where it actually was and he opened the door but forgot to unscrew the lid. He then grabbed the pump and repeatedly touched it to the lid. I told him he had to unscrew the lid first. He put the pump back, unscrewed the lid, stuck the pump in the tank and then looked confused as to why it wasn’t filling up. I told him to press the button and he kept pressing the area where it shows the amount of gallons. I had to show him what button to press, how to hold the lever and how to screw the cap back on... It’s simple things like filling up a gas tank, an errand that we are able to do so thoughtlessly, that prove to be nearly impossible for Trevor.

He also has a hard time figuring out what tools or utensils to use. The other day, he ate an entire bowl of cereal with a fork without realizing anything was wrong. Before his injury (or premorbid as the professionals say), he was a huge fan of condiments. He would dip everything in anything. Now, when he’s eating, he has a really hard time figuring out what to do with sauces. He will dip his steak in his lemonade or eat a mouthful of wasabi and not be fazed whatsoever. Today, at dinner, Trevor pulled himself up to the table and instead of putting his hands on the table, he stuck his hand directly in his mashed potatoes. Instead of using a napkin to clean it up, he just held his hand out confused. Yes, my 23-year-old brother still needs his mom to wipe the food off his hands.

Object identification is another difficult feat for many people with parietal lobe injuries. When doing flashcards with numbers, Trevor kills it. He will count in his head until he gets to the number shown on the card and say it out loud, getting it right 80-90 percent of the time. However, with objects and colors it’s a whole ‘nother story. When holding up a color flashcard, he will usually start with “pink” or whatever color gets stuck (perseverates) in his head, and then fire off a bunch of random colors. He won’t guess it correctly until you trigger the word, saying the first sound or syllable. When holding up a flashcard with an object such as a cat, house or book, he will say the most insanely random words such as “flashlight,” “ABCD,” “Wisconsin,” “spaghetti” or anything that randomly pops into his head. I'm not sure whether to laugh or cry. Although the assortment of words he shoots off is pretty hilarious, it's heartbreaking to see him completely unable to come up with a simple word like "dog."

So there it is. Trevor is a perfect demonstration of the invisible injury. Just because he looks fine doesn’t mean he is. His understanding, judgement, impulsivity, cognitive ability and just about every other aspect of his life are still seriously affected. He’s not the Trevor Rhoda we all know and love, but he’s getting closer and closer. Keep up the prayers, ladies and gents; this battle is not yet over.

Tuesday, August 2, 2011

Six months ago, I woke up to a phone call saying Trevor was being rushed to the hospital. Again. After I thought all this chaos was over. I was told that there was a good chance he wasn’t going to make it and that I should say my goodbyes.

Six months ago, Trevor was taken into emergency surgery where they removed a mass of damaged brain cells and an 11-centimeter chunk from his skull. A newborn baby could fit through the hole in Trevor’s head. He was bloody, sweaty and swollen. His eyes were glued shut and his lips were puffy and lopsided. His entire face was orange from the iodine used during surgery. The left side of his head was completely shaven with about 50 staples in a curve around his ear, looking just like a baseball. The right side of his head was covered in thick, curly brown hair. He had blood seeping out the orifices in his face. There was a bag of what looked like cherry Koolaid being drained from his brain. He was wearing only a hospital gown with his hairy chest, arms and legs visible.

Six months ago, there were beeping machines everywhere with numbers that I had no clue the meanings of. Trevor looked like a robot with hundreds of cords and batteries keeping him barely running. He had a feeding tube in his nose; a ventilator in his mouth; 2 drains in his head; probes and electrodes all over his head and chest; IV lines; a catheter; a temperature tube in his throat; and circulatory leg cuffs on his ankles. He was tied down to the bed like some sort of wild animal, in case he miraculously woke up out of his comatose state and tried to escape. But Trevor wasn’t moving; he wasn’t even a person. He was completely brain-dead.

Six months ago, I had no idea what Trevor's future looked like or if he even had a future.

Today, Trevor is relearning how to walk and talk. He’s going to therapy and improving more and more each day. He is driving a boat, exercising and remaining extremely positive. The stubbornness we’ve always complained about is without a doubt what has pushed him through this recovery full-throttle. He is now able to lift his right arm, which we were told was paralyzed. As of a few days ago, he can now lift his right leg up a few inches as well. The fact that he can do this means there’s a chance he will get his right side functionality back.

Today, Trevor’s main struggle is communication. He still has a hard time finding words. The only full sentence he can say is still “My name is Trevor Rhoda.” He still repeats the same few words over and over again. He still can’t order food at a restaurant or tell us what he wants to do. But he can respond to normal conversation semi-accurately. If you ask him “what’s up?,” he’ll respond with something along the lines of “good” or “nothing.” If you hand him a lemonade, he’ll say something like “alright” or “yep.” When cued, he can finish the lyrics to songs such as “I like big butts and I cannot lie,” “Happy birthday to you,” “Honky Tonk” and “Just a Friend.” As far as we’re concerned, he understands the majority of what we’re saying, he just can’t initiate or come up with words on his own. However, as we all know, verbal communication isn’t the only way to communicate. Trevor finds other ways to tell us what he wants and needs. He can still nod and shake his head, high-five us, push us away and flip us off. He still has the same goofy expressions and sense of humor as he always has.

Today, Trevor and I were home alone. I said, “No parents, no rules, let’s party!” jokingly. He looked at me, pointed to the door, said “well” and expected me to somehow interpret what he was trying to say. I followed him out to the garage, where he opened up the mini-fridge, handed me an ice-cold PBR, said “drink” and laughed. I didn’t drink it, of course, but it’s things like this that make me believe he’s still the same Trevor and that nothing, not even six brain surgeries, can change that.

Today, Trevor wakes up every morning and goes to the gym with our stepdad, where he lifts weights, rides the recumbent bike and does leg exercises in the pool. He then watches a few minutes of several different movies on TV until he has to go to therapy. During therapy, he works on his speech, writing and coloring. After therapy, he comes home, watches TV until dinner time and then after dinner, watches more TV. Throughout the course of the day, he takes a couple walks down the street and back. At any given time, if you ask Trevor what he did all day, he will respond with, “sit there.” The sad thing is he’s right; while he’s at home, all he does is sit there. It’s painful to watch my brother, who used to be one of the most active people I know, have no motivation to do anything. And even though I am so, so proud of his progress, it’s still heart-breaking to see him like this. I wish things were different. I wish he flew through this recovery as quickly as the last one. We’ve been told over and over again that this recovery is going to be a marathon. However, patience is something necessary for a marathon, and patience is a virtue I’ve never been blessed with.

I still don’t know what’s in store for Trevor’s future but I do know that he has surpassed my expectations in every way possible. The past six months have by far been the longest, most difficult and draining months of my life but they’ve also been the most exciting, fulfilling and miraculous. Trevor continues to amaze me with his dedication, positive attitude, stubbornness and sense of humor. I can’t wait to see where he’s at six months from now!

Monday, June 27, 2011


Let's say, hypothetically of course, you have gone through two life-threatening TBI's and you now struggle with walking and talking. Let's say you sit around the house all day and have nothing to look forward to except for Jersey Shore and 17 Again. Well, that's my brother and the person that many of you claim to be friends with. He lies on the couch all day, bored out of his mind. He’s sick of seeing the same surroundings and the same people. There’s nothing that brings more joy to his life than the rare occasion that friends stop by.

If you claim to be Trevor’s friend, then come visit him. During the last rodeo, there were several visitors a day but during this rodeo, visitors are scarce. The only difference between this summer and last summer is that we no longer have a nice, shiny Malibu Wakesetter. This time around, we have nothing more than a shitty pontoon and our company to offer you. But that shouldn’t matter. You can’t let that be the reason you aren't actually being Trevor’s friend during the hardest time of his life.

We understand that it’s probably difficult and definitely awkward to see him like this, but get over it. It’s hard for us too. I would like to think that if I were in a serious accident, people would be stampeding to come visit me, and I’m sure you would like to think the same. So please, I’m begging you, come hang out with my brother. Take ten minutes out of your day to spend time with a great person who has gone through more than you or I could even imagine.

Monday, June 6, 2011

The Last Time I Saw Trevor Before The Accident

January, 2011

I am at the Garage, my favorite bar in Salt Lake City, with a few of my friends. We are drinking, dancing and having a fun, carefree time when all of the sudden I see Goost, a mutual snowboarding friend of Trevor and mine who we have known since middle school. I freak out because I know that with Goost generally comes Trevor...

I haven’t seen Trevor since I left Michigan at the end of last summer, four months after his first accident, while he was still recovering but probably 80 percent back to normal. When I left Michigan he was already back to everyday life, wakeboarding, skateboarding and doing normal 22-year-old guy things. I had heard he was back to drinking and smoking cigarettes but had yet to see it with my own eyes. Trevor was a topic I tried to avoid when talking to my parents or friends. I distanced myself from what was going on in his life with fear that anything would happen again because it was something I wouldn’t be able to handle. I knew my mom had talked to all of his friends and informed them of the dangers of him doing any braincell-killing activities. I also knew that his friends probably thought she was being overprotective and allowed, possibly even encouraged, Trevor to do these potentially life-threatening things.

I am standing in the corner of the bar and making a point not to make eye contact with Trevor. My friend brings me a shot, obviously noticing the overwhelm I was feeling from having my brother in the same vicinity. All of the sudden, Trevor walks over to me, gives me a hug and says, “what’s up whore?,” a nickname he came up with when “Alyssa” was too difficult for him to say after his accident. I force a smile and pretend to be excited to see him for the first time in months. We make small talk, asking the typical “how are you?” and “what have you been up to?.” Pretending to be too intoxicated to converse, I take a bathroom break, where I lose control and have a panic attack.

When I pull myself together and come back out, I see Trevor wandering around with two beers in hand. Oh great, I think, not only is he drinking but he’s double-fisting. He comes over and says, “In there for long enough? Pooping in a bar, Alyssa? Classy.” I laugh as he hands me one of his beers and asks me if I want to go smoke a cigarette with him.

“Trevor, you know you shouldn’t be smoking or drinking, right? I’m pretty sure you don’t have many braincells to spare at this point.”

“It’s my life. I do what I want!”

Throughout the course of the night, I oversee Trevor taking several shots and smoking even more cigarettes with these people that claim to be his friends. On my way out, he tells me to call him the next morning so we can get a greasy hangover breakfast together. We both know I wouldn’t call. Little did I know, this would have been my last opportunity to see him able to talk for a long time...

Monday, May 30, 2011

Trevor and I were walking out of a movie today when some kid, who I would guess to be 15 years at the oldest, pointed to Trevor from across the hallway and said to his friend, “Hey look how that retard over there walks,” extremely loudly. Out of all the people in the area, I was the only person who seemed to be bothered. Trevor, who obviously heard, looked over with the typical blank look on his face while I was too shocked to do or say anything. I simply looked at the kid with a disgusted look on my face, thinking “what has this world come to?,” while him and his friend just walked away giggling like hyenas.

I’m not usually one to be affected by what people say, but for some reason this really got to me. The entire car ride home, I was on the verge of having a heart attack. I was running through all the things I could’ve or should’ve said to this kid to put things into perspective for him. I could have explained to him what happened to Trevor. I could have called him a handful of terrible names. I could have told him that Trevor used to be a better athlete than he’ll ever dream of. I could have stuck up for my brother in so many ways but there was no point. Obviously what this boy said was just a mirror reflection of how society views people like Trevor. Telling one kid how hurtful his words were wouldn’t change the world’s opinions though, so it would be fruitless.

Everywhere Trevor goes, people look. They see a young, attractive guy who is obviously handicapped and can’t help but stare. Little kids look; grown adults look; even people in wheelchairs look. I know it’s inevitable and I know I’m probably guilty of it too, but I hate it. Not only do I hate the fact that Trevor is in this situation, but most of all, I hate the fact that he probably notices these people staring and knows it’s because he’s different, because he’s handicapped.

People don’t understand the vulgarity or negative connotation of the words “retard” or “retarded.” Trevor’s accident has made me notice the ridiculous amounts of times people use these words in everyday life: at the bar, at the park, everywhere. But nobody thinks twice about it. That is, until they say it around someone who has had a mental or physical handicap change their lives. Now, people either say it without hesitation, or they say it and then look at me with a deer-in-the-headlights look, praying that I don’t freak out. And although I probably wouldn’t have noticed anyone saying it two years ago, there’s something about it that makes my stomach drop. I immediately stop what I’m doing, take a deep breath and say, “we don’t say the “R” word.”

Tuesday, May 10, 2011

After driving 24 hours, I finally got home late Friday night. I walked in the door and immediately my mom wanted to show me the new bathroom vent. So I walked into the bathroom, saw this toilet contraption, walked into the living room, saw Trevor's wheelchair and had an anxiety attack.

I'm not sure why but I think having handicap accessible things in our home just makes the situation seem more permanent. During Trevor's first rodeo, he was already walking and talking on his own by the time we were home. But this time he still requires 24-hour watch and needs assistance walking. He tries to be independent and walk on his own, forgetting that his balance is not the most reliable. He sort of resembles an 8-month-old as they take their first few steps. His left arm (the mobile one) sticks out completely parallel to the ground whereas his right arm (the immobile one) makes an upside-down ballerina arm curving in a 'C' towards his body. He walks with his right foot pigeon-toed and his left one completely straight and wobbles like a penguin. It's like he's doing the "I'm a little teapot" dance whenever he's standing. He always has both a handle and a spout.

Trevor has to get really creative when it comes to communicating what exactly he wants. Generally it's just a big guessing game, which is frustrating for everyone involved. He does a lot of pointing and saying "alright," which helps nothing. Every time he tries to get up off the couch, we go through a routine asking him what he wants. "Do you have to go to the bathroon?" "Do you want food?" "Do you want to go somewhere?" Your guess is as good as ours at any given moment...

SUNDAY

Sunday was Mother's Day and Trevor's 23rd birthday. All my mom wanted for Mother's Day was for all of us to wake up and go to church together. We were all ready to go but when we told Trevor to get in the car he yelled, "No, no, no, no!" So Walker had to stay home while my mom, Payton, my friend Megan and I went to church. We sat through the entire service hoping Walker would somehow convince Trevor to come, but it never happened.

Later Walker and Trevor met us for breakfast. I've determined that him being out in public settings such as this is the best therapy. It makes it so that he can't just lay at home on the couch, but rather has to practice normal modes of communication. I'm sure it's extremely frustrating and embarrassing for him, but I think there's nothing that will help him improve more.

We had Trevor's birthday party at our aunt and uncle's house, where he sat on the couch the entire time. When we were singing happy birthday to him, he laid his head down on the armrest and pretended to be asleep. He had no interest in his gifts, only said "alright" after opening each one, and then said, "welp" and pointed to the door when he was ready to leave. It's depressing how unenthusiastic he is about life, but I guess that's just a consequence of being unable to communicate.

YESTERDAY

All day I waited for the perfect opportunity to venture to a coffee shop to get started on my book. I finally told my mom and Trevor that I was leaving to go to The Strutt at around 2 p.m.. I went downstairs to get all pretty and as I was brushing my teeth, I saw Trevor’s reflection in the mirror. I looked over and he was standing there with my mom holding his arm and his finger pointed toward the ceiling.

“Whatcha doin’?” I asked.
No response.
“Is there a spider up there?
“Nope."
“Do you want to go get coffee with me?” I asked sarcastically, figuring there was no way he would want to leave the house.
Trevor nodded his head and said, “Alright.”

So I got ready, had my mom help Trevor get ready, and Trevor and I headed to The Strutt. I went about five miles per hour under the speed limit the entire way, which was more obnoxious than a father first driving his newborn baby home from the hospital. There is so much responsibility and liability having Trevor in the car with me. He’s like a 23-year-old man version of Humpty Dumpty. But scarier.

Once we were to the Strutt I helped him out of the car and got him settled at a table with Netflix going on his new iPad, and then I went up to the counter and ordered us coffees, his decaf of course. During the four-ish minutes it took the barista to make our drinks, I probably looked over a hundred times to make sure he was okay. But I didn't want him to know I was worried so I had to try to do it sneakily. I returned to the table, opened my computer and wrote a few paragraphs of my book. He watched the first two minutes of four different movies and then pushed his drink towards me, put his iPad in its case and tried to get up.

“Trevor, do you want to go home?”
“Nope.”
“Do you have to go to the bathroom?”
“Nope.”
“Do you want to go somewhere else?”
He nods his head.

Oh, great, now I had to somehow figure out where Trevor could possibly want to go. After battling for him to find the words and me to guess what he wanted to do, I gave up and decide to head back home, which was depressing for both of us. An afternoon trip to the coffee shop ended up only lasting 20 minutes. Tops.

If anyone has any ideas as to what a 23-year old man would enjoy that doesn't include drinking, smoking, going to a bar, or anything that seems childish, PLEASE let me know.

Sunday, May 1, 2011

Osama Bin Laden, the number one most wanted man in the world, is now dead and in U.S. hands.

Just a little fun fact:

After Trevor's first accident, when he was first admitted to Mary Freebed Rehabilitation Hospital, the nurse asked him who the president was. He looked at her like she was stupid and replied nonchalantly, "OBAMA BIN LADEN."

Pretty funny.

Sunday, April 24, 2011

Makes me think

As hard as we try to convince ourselves that our lives are more tragic or difficult than anyone else's, we're wrong. Here are some inspirational bits from normal people, that will make you both laugh and cry...

http://makesmethink.com/

Friday, April 22, 2011

Leaving Day

I've had a hard time bringing myself to writing this blog post because, quite frankly, I don't really want to think about it. As long as I ignore the fact that my delicate, recovering brother and the rest of my family are across the country, I'm completely fine. But here we go, just for you guys...

Trevor got discharged from the hospital on Wednesday, April 20th, National Weed Day. The night before, he kicked everyone out early so he could get some sleep for the big day. When I walked into the room to pick him and my mom up that morning, he was sitting in his wheelchair, bonsai plant in lap, ready to go. He had the biggest smile I've seen on his face since the accident. He was ready to get out of there. And so were we.

On the car ride to the airport, Trevor of course got shotgun. He immediately turned the awful radio music up and danced-- well, wiggled his head around to his own imaginary beat-- the entire way. He would take a few breaks in order to tell me which way to go, like I hadn't been the airport a million times before. It's crazy how six brain surgeries later, he still knows his way around Salt Lake. He then got mad at me for not dropping them off curbside, forgetting that he obviously needed assistance.

Once we were parked, my mom told him to wait for her before getting out. Testing her, he kept sticking his leg in and out of the door, and then tried to get out on his own. My poor mom! He absolutely loves freaking her out.

Trevor was excited to go on the moving walkway, or whatever you call it. The entire time, he was trying to walk super fast and was making this exotic cooing noise, which we're not sure the origin of. It's almost like he was aiming for the Stewie voice from Family Guy, but it sounded more like an elderly woman whining about her missing dentures. When my mom tried to help get him off the escalator, he decided it was a good idea to try to ollie off. He lost his balance and nearly tipped over. At least he thought he was funny because it scared the rest of us to death.

After checking their bags, an airport employee came over with a wheelchair for Trevor. He wheeled Trevor directly to the front of the security check line, which was longer than I've ever seen at the Salt Lake airport. Just another advantage for the handicapped!

This was when we had to say goodbye. I tried to get Trevor to give me a hug, but as usual he refused, giving me a high-five instead. Then I hugged my mom. I couldn't look either one of them in the eyes because I knew I would break down. As soon as I turned around to walk away, I lost it. I'm generally okay with goodbyes, but this was indescribably difficult.

I bawled my eyes out for a good five minutes, and then a sudden feeling of relief took over. I no longer felt obligated to go spend my nights at the hospital instead of doing homework. I now had the opportunity to do what I needed to do in order to get my life together. Since they've been gone, I've driven toward the hospital completely out-of-habit three times. It's weird not having somewhere to go in between classes or during the random breaks in my day. But, it's unreal how much I've gotten done since Wednesday. I've written papers, applied for jobs and figured out that I'm somehow graduating in May!!

The reality that my brother is still recovering from his brain injury, struggling with walking and talking, has completely escaped my thoughts. It's been a really nice two-day mind vacation. And to be honest, I don't think this nightmare will become reality again until I'm back in Michigan in two weeks, which I'm completely okay with. Out of sight, out of mind.

Monday, April 18, 2011

And now I'll give a blunt and possibly offensive addition to what my mom said. Being Trevor's friend may not be the best way to be Trevor's friend during this recovery. What do I mean by that? Well, there's a good chance that a lot of you will want to let Trevor do things we aren't okay with in order to be the cool friend. But that is going to do nothing but hurt him at this point.

During Trevor's first rodeo, many of his "friends" found it appropriate to let him do a number of brain-damaging activities without my mom's approval. They took it to the point of even blocking my mom and I from their Facebook albums displaying pictures of Trevor drinking beer, smoking cigarettes, etc. They took Trevor away from the house and failed to check in with us to tell us what they were doing or when he would be back. Their excuse was that it was an invasion of Trevor's privacy. However, when someone has gone through six brain surgeries, even if they appear normal, their judgment may not be. So no, it is not okay for Trevor to be anywhere without his family's approval.

The poor attempts at being Trevor's friend didn't kill him last time; but this time they will. If you feel the need to hide what you're doing with Trevor from his family, there's a good chance you shouldn't be doing it and there's a good chance you aren't actually his friend. If you think we may be overprotective or if you think you know what's best for Trevor, then you're wrong. We've been here for the past 75 days and trust us, Trevor's life isn't something that can be put on the line anymore.

So if you want to be Trevor's friend, then be Trevor's friend. Help him recover but don't let him do the normal 22-year-old activities that you probably enjoy. Don't try to take him away from the house because although it may be fun for him, it's not going to help him. He's a porcelain doll stuck in a grown-ass man's body, and we don't want him to shatter. It would be quite the mess to clean up!
While wheeling Trevor to the cafeteria, I asked him what his plans are for when he gets home on Wednesday. He replied, "Sure." I asked, "You're going to 'sure' when you get home?" He laughed and then snapped, "Skateboarding."

My stomach dropped. I told him that there is no way in hell any of us are going to let him anywhere near a skateboard when he gets home. I then explained to him that after one brain injury, he was four times more likely to have another; after two brain injuries, he is now 16 times more likely to have a third. His eyes widened, but I wasn't done preaching. I informed him that if he gets the smallest jolt or bump to his head, he won't survive. He will die, no ifs, ands or buts about it. With a huge portion of his brain and skull already gone, he absolutely cannot afford anymore loss of brain cells. That means no more drinking, smoking or anything else that could cause damage. So, no, he will not be skateboarding when he returns home.

I was beginning to sound like his mom, but he seemed to get the point. He looked at me with a look of surprise and said, "Oh shit!" I replied, "Oh shit is right. So are you going to skateboard when you get home?" He said, "Nope." From his facial expression, it seemed like he was finally starting to realize the seriousness of the situation...

After his first rodeo, we had a really hard time finding a balance between safety and freedom. Given the fact that he is currently in the same situation again, we clearly failed to find that balance. This time, however, there is no room for error. We have to put his safety first no matter how mad or annoyed he gets because if we don't, well I don't think there will be a next time.

Having said that, here is some advice (and by advice, I don't mean it's optional) from my mom to those of you who plan on being there for Trevor during his recovery. She has been by his side for the past 75 days and unarguably knows better than anyone else what's best for Trevor. So listen up, homies:

If you plan to be with Trevor:

Stay as close to him as needed so that if he starts to stand up, you can be there to help him if he loses his balance.

Even in the bathroom, no matter if he says “no,” don’t be too far away.

This might help motivate you: If he falls, he WILL hit his head, and he WILL die.

Always watch his right arm and leg because he forgets they are there. Always make sure his right foot is positioned correctly. Make sure his right ankle isn’t twisted. Always check his right foot when he’s about to stand.

When he walks, gently hold his right upper arm. Let him sway as needed for balance but be prepared to catch him if he trips or if his right knee buckles. Always watch his right foot to make sure it doesn’t get caught on the floor as he pulls it forward. Always watch his right hand to make sure it doesn’t get caught on something extending from the wall, corners, a door knob, etc.

If he tries to talk but can't say a word or the right word, or if he says something that doesn't quite make sense, give him some time and then give him some choices. "Do you want 'sprite' or 'lemonade?' Don't be dependent on his nos meaning "no" and his yeses meaning "yes." In fact, he's less than 50% accurate. He has "expressive aphasia." Google it when you have time; it will help you understand.

Closely watch for inappropriate actions, especially when eating, such as drinking the ketchup (google "apraxia"). Nonchalantly, replace the ketchup with something to drink. Absolutely don’t laugh or make a big deal of it. Just quietly correct it. There will definitely be a time in his future to laugh at silly things he used to do (I think that showing him that he is constantly improving is great for his recovery) but not right when it is happening.

Television seems to be very therapeutic to him but not when anything else is going on in the room. Mute the TV when there are other conversations going on. He gets very frustrated when attention is not paid to the task at hand.

Keep in mind that Trevor has been inside a hospital for over 75 days. His eyes will be sensitive to light and the stimulation in the car or a restaurant might be overwhelming. Remember, if you are with Trevor, it MUST be about Trevor. When there is a lot of other stimulation, make sure any conversation or music is quiet.

Remember: no caffeine, nicotine, sleep deprivation, jolts to the head, or alcohol. So if you are a smoker, chewer, drinker, or late-night partier and you cannot refrain while you are around Trevor, then DON’T BE AROUND TREVOR.

Don’t say, “if your mom finds out, she’ll kill me.” Although I’m flattered that you care about me, I’d rather you care about Trevor. He needs to know that you care about him. That means that if you come to my house, I should be able to offer you a drink, and you should have the courtesy to turn me down SO TREVOR CAN SEE THAT IT IS YOUR CHOICE. He needs to constantly witness his peers making these choices. Please help teach Trevor how to say “no” to the things that could kill him! I will not judge you for the choices you make while not around Trevor. I completely get that this stuff is super fun and I hope you completely get that it isn’t an option for someone that has had six brain surgeries!

Jolts to the head include getting hit by a basketball, baseball, or any other kind of ball with the exception of a nerf ball. So if you cannot guarantee that Trevor will catch a ball being thrown at him (by the way, YOU CAN’T), please don’t throw it at him.

Definitely not least or last, unless you hear differently FROM ME, Trevor will not snowboard, skateboard, wakeboard, or ride a snowmobile EVER again. I am sure you understand how devastating this is for Trevor. Therefore give this some thought. Try to figure out how you are going to handle these subjects in a conversation.

If you disagree with the importance of any of the above, then please let me know. I released Trevor to the world last rodeo, and the world did not take care of him. Please help take care of him this rodeo!

So, there ya have it. We really appreciate your support and your being there for Trevor, but please help us keep him alive! We like him and would REALLY like to keep him around...

Sunday, April 17, 2011

Trevor is officially being booted from the hospital April 20th. Yes, as in this coming Wednesday. So for all of you Salt Lake City folks who have been meaning to come visit but haven't had the time... Get your butts over to room 2613! Sundays are not fun days here at the hospital, so please come visit him and convince him to get out of bed.

It is absolutely unreal to me that he's finally leaving. We've been here for the past 74 days. I'm not quite sure what I'm going to do when I no longer feel obligated to go to the hospital during each and every tiny break in my busy schedule. Although I'm really happy for him (REALLY REALLY happy for him), I'm having a minor heart attack myself. It's going to be extremely hard to get my stuff done when my mind is back in Michigan, where my brother is recovering from all this nonsense...

Thinking about Trevor having to go to the airport and participate in society on a regular basis kind of makes my stomach hurt. He looks perfectly fine; he doesn't look like he wouldn't be able to answer a simple question. What's going to happen when the stewardess comes by and asks him what he wants to drink. What's going to happen when the person at the baggage claim asks to see his ID? Is he going to respond with something along the lines of "penis" or "siamese twins?" Because I really hope not. He can rarely communicate but nobody in the general public would ever know that.

And in reality, we don't know whether or not embarrassment is an emotion his brain allows him to have. I don't know anyone that can help them self from staring at someone passing by in a wheelchair, especially someone as young as Trevor. It's not a normal thing. Is he going to know that all these people are looking and feel ashamed?

The other day, my friend Megan and I were talking about a presentation that Nicholas Kristof, a New York Times journalist, recently gave about people with disabilities in Africa. In many third world countries, where there's no money to care for those with disabilities, they are treated as outcasts. Often times, handicapped people are kicked out of their villages, neglected, severely abused and left to die.

But here in the wonderful US of A, those with disabilities are given better opportunities-- healthcare benefits, movie discounts, etc.-- and thank God for that. Not to mention Disney World... People in wheelchairs get to cut to the front of the lines at the most fun place on Earth! I'm really trying to convince my parents that a Disney World trip is in Trevor's best interest this summer.

Saturday, April 16, 2011

SURPRISE!

So, after spending the majority of the day at the hospital, I rushed home for what I thought was a dinner date with my dear friend, Megan. She called to say she was 15 minutes away, which I thought was a little out of the ordinary but didn't really think anything of it. Soon after that, I saw her headlights shining into my kitchen window, so I ran outside to say hello.

As I was prancing outside, I spotted my mom helping Trevor get out of the car, which caused me to literally stop in my tracks. I caught myself second-guessing whether or not I was actually awake because I often have rather realistic noontime dreams. But no, I was definitely awake. Megan looked over to Trevor and said, "Trevor, what did we practice saying?" and he responded with a casual, "uhhh." The whole car ride over, they practiced saying surprise, but clearly I blew the surprise by running outside.

We went to Ichiban, Trevor and my favorite local sushi spot, for their going away-- or returning home-- dinner. Apparently they had this outing planned for the past week and were able to keep me out of the loop. Regardless, I was stoked and more importantly, so was Trevor.

It was a pretty interesting experience taking Trevor out in public. With the help of my mom and his handy dandy cane, Trevor wobbled himself up the steps to the restaurant. In a way, I think he feels embarrassed when people see him struggling to walk or talk. Whenever he knows anyone is looking, he makes a sarcastic grunting noise similar to what you would associate with a lower-functioning person. It may seem like a good technique, but I'm pretty sure it makes people think he's actually lower-functioning. Although, I'm not sure if he would be considered lower-functioning, handicapped or disabled at this point. Personally, I'm going to wait until he's fully recovered before I try to label him.

Anyways, once we were seated, he immediately tried to drink out of the empty water glass in front of him. The waitress came over and asked us what we wanted to drink. He thought for a second and then replied, "pop," which took us all by surprise. Then my mom had to go through all of his options (which are limited because caffeine is frowned upon for those with severe brain damage). He said, "sure." My mom asked, "lemonade?" He said, "alright." Then, he looked over at Megan and me with his 'I'm about to say something hilarious' smirk, and asked, "uh, you guys want drinks?"

Then things got a little awkward. He tried to dip the edamame in his lemonade. He got a bad pod in his mouth, leaned over and spat it on the table. He poured water in his soy sauce. He took his chewed up edamame pods and threw them in the bowl with the un-chewed ones. He reached over and tried to take a drink of my beer. He tried to eat his ice cream with a straw. Oh well! Etiquette, shmettiquette; that's what I say...

After dinner, we stopped by Walgreen's to buy Trevor a cane. Megan and I tried to convince him to get the cheetah-print one, but he obviously chose the murdered-out, black one. While we were waiting at the cash register, he decided it was the right time and place to start dancing. There is absolutely nothing in the world that makes me laugh harder than Trevor trying to dance. He has a hard enough time balancing when he's standing still, so dancing is quite the sight. I have no words to describe it but it's hilarious; just take my word for it.

Normally I hate surprises, but tonight was quite the exception. Being able to free Trevor from the hospital for a night to go out to sushi was the best time I've had in a while. I love my mom, brother and best friend to the moon and back (and then to the moon and back a few billion more times)!!!

Thursday, April 14, 2011

For the past five days, I've been struggling, trying to come up with something mind-boggling to say about Trevor's recovery, my spiritual learnings or anything along those lines. Clearly, I've found nothing. Not because Trevor hasn't progressed and not because I haven't been enlightened by millions of little occurrences each day, but because I don't know the words to express what I'm feeling or what's going on at the hospital.

During the past couple months, I've made it seem like I actually thought Trevor was going to recover from this. By convincing all of you guys that he was going to be fine, I thought I would also convince myself. But I was wrong. I honestly never thought that Trevor was going to survive this; I never thought that he would be the Trevor Rhoda that we've all come to know and love. And I think that's why I was struggling so much, ignoring my life to spend time with him.

But things are different now. I may be over-optimistic, but I'm absolutely convinced that Trevor is going to pull through and return to normal. Eventually. I have no idea how long it's going to take-- a month, a year or a lifetime-- but I know he's going to be fine. Even though he still struggles with communication, his personality is all there...

He still looks at his friends and tries to be the cool tough guy, despite the fact that he's completely vulnerable, lying in a hospital bed. He tries to act all nonchalant when they enter the room, like them being there isn't the highlight of his day. He still laughs at their jokes but rolls his eyes when they say anything remotely serious.

He still looks at my mom like she's babying him and tries to hide his sincere gratitude for everything she's done. He still wants her to think that he's independent and can get by without her, but knows deep-down that he can't. When he wakes up, he still looks over to make sure she's there, and has a look of relief when he realizes she's been sitting there the entire time. He knows that he wouldn't have come this far if it weren't for her, fighting like hell, with his best interest in mind.

He still looks at me like his pestering little sister, pretending to be annoyed but then eventually cracking a smile or laugh. When my friends or his friends come around, he still tries to convince everyone that he's cooler than me. He still refuses to give me a hug or tell me he loves me (even though he did both at the bar three days before his accident). Truth is, I'm still his baby sister and always will be. Even though I've had to spend the past two months taking care of him-- helping him eat, go to the bathroom, etc.-- I still look up to him. I still want to grow up and be just like him, because he's my brother and I love him.

He's still Trevor, and nothing-- not even two traumatic brain injuries and six brain surgeries-- will take that away.

Saturday, April 9, 2011

GRATITUDE

Since there's not a whole lot to update you all on, I thought I'd do another post about remaining positive. I've never been an advocate for self-help books by any means. Nobody is the same and the idea of a step-by-step instructional manual on how to be perfect seems a little outlandish to me. However, the book Happier completely changed my mind.

One topic that caught my attention was gratitude...

Along with happiness comes gratitude. We need to realize what positive things we have in our lives that give us meaning, and focus on those. Although our lives don't always go as planned and although there are many obstacles that come flying our way (sometimes bringing everything else to a halt), there are always things to be grateful for. Once we begin to pay attention to the positive things in our lives, the negative things will start to wither away.

During Trevor's recovery, I have realized how many things we truly take for granted, like being able to walk to the mailbox or being able to eat ice cream with a spoon. If we take the time to appreciate all the positive things going on in our lives, we will without a doubt be happier.

According to research done by Robert Emmons and Michael McCullough, "those who keep a daily gratitude journal-- writing down at least five things for which they are grateful-- enjoy higher levels of emotional and physical well-being" (Ben-Shahar, p. 10). And who's not down for some higher doses of well-being?

I honestly don't remember the last time I sat down and thought about all the things I'm grateful for. It was probably during the typical Thanksgiving dinner when everyone has to go around the table and say something along the lines of 'I'm thankful for my family, my friends and the food on the table.' But that's definitely the extent of it...

Putting actual thought into it, here are a few things I'm grateful for during this crummy situation:

First off, I'm thankful that Trevor, who was given a decimal of a percentage chance of survival, is alive today. I am thankful for the crazy amounts of progression he has made during his recovery. I am thankful that I can walk into the room and see his smile every day. I'm thankful for the positive attitude he has had throughout all this. But most of all, I'm thankful that I've had the privilege to have him as my brother.

I'm thankful for my mom, who has proven to be the best mother on Earth. Not only has she been there for Trevor and myself during all this chaos, but she has literally given up everything in her life. She moved across the country, away from her dog and all of her fancy shmancy outfits, to spend each and every minute of each and every day by Trevor's side.

I'm thankful for my dad, who despite all the drama within my family, has taken a few weeks off life in Michigan to be here for Trevor and myself. I am thankful that he has sacrificed some booby-sales to support us during this hard time.

I'm thankful for Walker, my stepdad, who has gone through hell and back with my family. After years of torture from Trevor and myself, he has stuck through and proven to be the best, most sincere person I know. He has been a rock during this crisis, the hard foundation that keeps all of us standing. I don't know how he does it, but I am very, very thankful for him.

I'm thankful for all my closest friends, Megan, Ian, Claire and everyone else, who have provided shoulders for me to cry on during everything. Even though I've been an utter shit show, and have been terrible at returning phone calls, they've been awesome and I definitely couldn't be doing this without any of them!

Lastly, I'm thankful for all of you guys-- friends, family, friends of family, and family of friends-- who have proven to be a great support system for Trevor and the rest of the Rhoda/Walker clan. There is no doubt in my mind that the reason Trevor has progressed so much is because of all your kind thoughts, prayers and positive vibes.

So thank you!

Now go home and make a list for yourself. Write down five things you're grateful for. According to Ben-Shahar, "[t]he key is, despite the repetition, to keep the emotions fresh; imagine what each item means to you as you write it down, and experience the feeling associated with it. Doing this exercise regularly can help you to appreciate the positive in your life rather than take it for granted" (p. 11). It helps; I promise.

Thursday, April 7, 2011

HAPPINESS

Today, I woke up sick, skipped my first two classes and was feeling especially sorry for myself. It took me a few hours to motivate myself to do homework and the rest of the day to convince myself to go to my “Real-ationships and Emotions” night-class. In fact, I probably wouldn't have gone had my stepdad not come over and questioned whether or not I was going. He pays my tuition, so of course I had to go.

Although it took a lot for me to get in my car and drive to class, I am exponentially glad I did. It was by far the most impacting class of my entire college career and entirely changed my perspective on this dreadful situation my family is going through...

The topic of the day was 'happiness.' Oh, great! The last thing I wanted to hear was someone rant on about how we need to appreciate every second and find the positive in everything we do. My brother is in a wheelchair, my family is broken and my life is in shambles. I don't want to sit there and listen to someone tell me to find the joys in that; there aren't any.

So, I was sitting there half-listening to the group presentation, when the presenter read a quote which caught my attention. “Someone once told me that time was a predator that stalked us all our lives. I rather believe that time is a companion who goes with us on the journey and reminds us to cherish every moment, because it will never come again. What we leave behind is not as important as how we've lived” (Star Trek: Generations, 1994).

This was interesting to me because at this point in my life, it feels like time is, without a doubt, my predator. Time is constantly out to get me. Time is trying to ruin all of my hopes and dreams. I have three weeks until I'm supposed to graduate. During this time, I am supposed to complete two entire semesters of work. My brother is currently in the hospital with only a certain amount of time that his insurance will cover therapy for, but he clearly needs more than 60 days of it. We have a constant battle with time, and it seems to always take the win and then continue to rub it in with a long, drawn out victory dance without any “unsportsmanlike conduct” penalty.

The presenter then started talking about Aron Ralston. For a little background information, Ralston is the climber who was hiking around in southern Utah when an 800-pound boulder became dislodged and pinned his hand against a canyon wall. He was stuck there for five days, until he ended up having to amputate his own arm with a dull pocketknife. This split-second event, that he never anticipated happening, changed his entire life.

Okay, so what does this have to do with happiness or time? Well, we never know when an 800-pound rock is going to fall on us, or someone we care about. We never know when our time or someone else's time is going to be up, and our lives are going to be drastically changed. And for this, we must cherish every minute with every person we are privileged to have in our lives. Time is our friend, not our predator.

According to Henry David Thoreau, “[t]he greatest tragedy in life is to spend your entire life fishing only to discover that it was not fish you were after.”

I absolutely love this quote. Lately I have had the mindset that I will be happy once I'm graduated and once Trevor has recovered. I have kept these goals in mind, and have accepted the fact that until these goals are achieved, I will remain unhappy. By doing this, I have been drowning myself in negativity, in hopes that I will be able to come up for air when it's all over. But that's not the way to live life. I don't know when this is going to be over, or if it will ever be over. And when that happens, will I just be looking for some new goal that will somehow create happiness?

Dr. Tal Ben-Shahar explains this topic much better than I could even dream about. In the book Happier, he says "[g]oals are indespensable to a happy life-- to be happy, we need to identify and pursue goals that are both pleasurable and meaningful. Happiness grows less from the passive experience of desirable circumstances than from involvement in valued activities and progress toward one's goals" (p. 65).

So, although it is really good to set goals, we will never be happy if we depend on the achievement of these goals. We need to find happiness along our journeys, not assume it will be at our destinations. Basically, we will only be happy once we are able enjoy the little things in life. Happiness isn't something that is found; it is something that must be created.

Wow! I don't know if any of that got to you, but it definitely hit close to home for me. After class, I got in my car and dreaded the fact that I promised Walker I'd stop by the hospital. The song "Don't let it get you down" by Spoon came on, and my mind all of the sudden became clear. I can't let the fact that my brother is in the hospital get me down. I need to stop taking life for granted and start creating happiness with each little thing that happens in my life.

Once I got to the hospital, I got the best spot in the parking structure. Then, I went up to room 2613 and saw Trevor's big, crooked, half-paralyzed smile. He lifted his hand up to give me a 'high five.' My mom, Walker and Payton all came over and hugged me. All of the sudden, I burst into tears. I left the room, cried the entire way home and for a little while after I got home. I don't know if it was a sad or happy cry, but it was exactly what I needed, exactly what I've needed this entire time. After that, I went out and had a really fun night with my friends. It was the first time since Trevor's accident that it hasn't taken me hours to fall asleep.

Life is good.




of Trevor Rhoda 's speech therapy...



Trevor wheels himself over to the table, locks his breaks and begins to wipe off the table. Michelle, the speech therapist, asks, "Trevor, aren't you going to give me some kind of greeting? Awkward silence. Michelle then suggests, "Hello? Be quiet? Go to-?" Trevor replies, "church." Not exactly what she was looking for, but hey, we'll take it! Most people would probably finish that phrase with 'hell,' but Trevor went with 'church' instead.

The therapist then tells Trevor to say the months of the year. He starts with, "Monday, Tuesday, Wednesday, Friday." She then helps him by saying, "January, February-?" He responds with "July, August, September, November." For a third attempt, he says, "January, March, April, September, November, December." Then he gets all of them right, just forgetting October.

Next, she wanted him to count from one to 50. He began with "March, April, May" followed by "29, 10, 30 (pronounced 'thitty'), 31 (pronounced 'thitty-one'), thitty-two, thitty-seven, 60" then, "50, thitty, thitty, thitty" and then finally successfully counted from one to 50 with little clues from the therapist. Trevor is awesome. His progression absolutely astonishes me.

The therapist talked about how Trevor needs to find the balance between automatic and accurate speech. Everything that he says is really automatic, such as finishing the phrase "go to" with "church," or reciting the months of the year. But what he needs to work on is making sure he's saying things correctly, not just listing off whatever flies from the back of his head. To me, it's really similar to a toddler reciting the alphabet, where they maybe can't decipher from letter to letter, combining LMNOP into one word, but they have the entire song memorized. That's pretty much how Trevor is communicating right now, if you can call it communicating, that is...

Trevor was able to place cards in numerical order from two to seven. He couldn't distinguish between red and black. But all of the sudden some sort of genius power switch turned on and he was able to turn over the numbers she told him to, follow basic commands with few errors and even hand her the cards in the specific order she told him to. Yup, I'm pretty sure he's actually fine, just trying to trick us and stress us all out for a few months.

The therapist held up picture cards and had Trevor describe what was going on. The picture to the left is the first one she held up. He noticed the short shorts and then shouted, "Whoa, no!!," shoved it back at the therapist and moved on to the next one.

She held up a picture of someone washing dishes and asked Trevor what was going on. He said, "jelly." She cued, "washing off the-?" He replied, "cable" and then after a little help, said, "dish."

She then held up a picture of someone playing cards. He said, "pancakes" and then "blueberries" and then "lawn mower." She asked what the person was holding. He replied, "cereal," laughed, and then said "pancakes" and "peanut butter." She cued, "playing-?" He replied, "dice" then "cards" then "pancakes" and finally, "playing cards."

Next was a picture of someone washing their hands. He said, "pancakes" of course. She told him to fix it. He said, "pancakes" and then "laying down" and then "brushing" and then "washing." She helped with, "washing what-?" He replied "chairs" and then laughed. The therapist asked, "washing hands with-?" He said "soap!" She asked him to repeat, "washing hands with-?" He said "hope."

For the picture of someone digging in the dirt with a shovel, he said, "shoveling the sidewalk" right off the bat. Fantastic!!

The best part of Trevor's speech therapy went exactly as follows:

For a picture of a lady playing the piano...

Trevor: Soft bed
Michelle: Pi-?
Trevor: Penis [laughs hysterically]
Michelle: She's looking at the-?
Trevor: Penis [laughs again]
Michelle: Mus-?
Trevor: Museum, music

And then for a picture of a man playing the guitar...

Trevor: Penis, bandaid, penis
Michelle: Playing the-?
Trevor: Piano, guitar

Yup, I might have a middle-school sense of humor, but that was hilarious. I really hope the word 'penis' doesn't get stuck in Trevor's head for the rest of his life. On the other hand, maybe it would brighten things up a little...

Wednesday, April 6, 2011

Check out the obstacle course that Trevor conquered in physical therapy! It's interesting to me that they are having him walk on mats and weave between objects when he hasn't even mastered walking on tile yet. It takes a ton of effort for him to drag that right leg forward, and he gets worn out quickly. Walking the length of a football field is like doing a marathon for Trevor.

He's still not moving that right arm on his own yet, which is terrifying to me. They shot him up with Lidocaine (which is what triggered his right leg to move) but it was unsuccessful. He ignores his arm completely, almost as if he doesn't even know it's there. He does everything with his left arm and doesn't even consider trying to use his right one for anything.

Imagine trying to eat a delicious salad with one hand; it's nearly impossible. Trevor ends up with a pile of lettuce in his lap and random scraps all over the table. He has no way of holding the plate still so he has to play a stabbing game with everything sliding all over the place. He will drop his utensils in his lap and then forget where they are and continue eating his meal with his hands. I absolutely hate watching him eat. We seldom have to put thought into how to be smarter than our food, but Trevor does. Oh, the things we take for granted in life...

The thing that probably blows my mind the most is the fact that Trevor will go all day saying only random words that make no contextual sense, and then all of the sudden, BAM!, he says a full blown sense-making sentence like, "I'm sick of the eggs and sausage" or, "Turn the damn light off!"

After therapy, I tried to help Trevor get from his wheelchair to his bed. He rolled his eyes, gave me a death-stare and firmly said, "Alyssa, Alyssa!" He gets really mad at us for trying to help him, but forgets the fact that he can't actually get up or walk on his own. The nurses are trying to convince us to leave him alone for a while to see how independent he is. In theory that sounds great, except for the fact that Trevor will try to walk to the bathroom on his own. And I know they're all really good at caring for people with brain injuries, but quite frankly, we're not ready to go through this again. So no, we will not be leaving him alone with the high risk of him falling and getting yet another brain injury.

Some interesting events that went down in the past few days:

Me: Trevor do you want to rent a movie?
Trevor: [Shrugs]
Me: I saw Jackass 3 down there. What do ya think?
Trevor: Yusss! But um, [mumbles something in gibberish and then points to our dad]
Me: You think Dad won't like it?
Trevor: [Laughs]
Me: Should we just get it anyway?
Trevor: Yes [but shakes head]
Me: Yes or no?
Trevor: No [but nods]
Me: Trevor, I'm getting a lot of mixed signals here. Should we go get Jackass?
Trevor: [Laughs] Alright.

Later, my dad asked Trevor he wanted some of his ice cream. Trevor responded with a firm "no." About two minutes later, he sat up and shouted, "I want some!"

Our sweet, innocent, little ten-year-old brother, Payton, was running around, dancing and making a bunch of ruckus. Trevor put up with it for a few hours and then all of the sudden looked at him, said "F*ck you!" and then continued to watch MTV. He has quite the potty mouth lately, but who could blame him really?

Sunday, April 3, 2011

Happy Brain Injury Awareness Month, y'all. According to the CDC, "[A]n estimated 135,000 sports- and recreation-related TBIs.. are treated in U.S. emergency departments each year." That's right, 135,000. So do your friends and family a favor; wear a helmet when you do super fun things! Trust me, TBI's aren't all they're cracked up to be...

I was convinced that yesterday, the one-year anniversary of Trevor's first accident and two-month anniversary of his second, was going to be hell. For the most part, I was right. Generally the word 'anniversary' has a positive connotation, with images of happiness, love and good memories. This anniversary, however, includes none of those things.

It has officially been a year since all of our lives have been drastically changed. The first accident was really hard in the fact that we had no idea what to do or what to expect. The second accident has been a million times worse. Although we sort of know what to do, we have no idea what to expect. There is no way of knowing where Trevor's going to be a year from now, and to me, that's the scariest thing ever.

I believe that God throws each of us about five percent more than we can actually handle in life, just to test us. But in my family's case, I'm almost certain he got his math messed up. During the first accident, we were tough as nails and had full control over our emotions. This time on the other hand, we are a chaos-filled disaster.

After Trevor beat death once, we thought we had a bunch of good luck coming our way. But apparently we were wrong; we're on some sort of nasty streak of bad luck. We were planning on throwing him a huge one-year anniversary bash, thinking that he would be all fine and dandy and that we could celebrate a new year and move forward. But instead we're stuck in another hospital having to go through everything we've already gone through, but exponentially worse.

It's like a sick form of déja vu that none of us are quite ready to handle...

Friday, April 1, 2011

Trevor amazes me, both with his recovery and with his attitude. Obviously he gets frustrated several times a day, but look where he's at and what he's gone through. I would be nothing but negative in his shoes. I wouldn't have half his motivation to move on or get better. But somehow he never gives up. When he realizes for the eight-millionth time of the day that his right arm isn't going to move, or when he spills ice cream all over his lap, or when he says the wrong word, he simply takes a deep breath and moves on. Over and over again. Multiple times a day.

I truly believe that although Trevor's stubbornness is a pain in the arse most of the time, it's the reason he recovered from the first injury and is going to recover from this one. He doesn't take no for an answer. The doctor told us he wouldn't be able to walk, but he's walking with a leg brace and a cane. The doctor told us he wouldn't be able to talk, but he's saying more words than your average six-month-old. Do you think it's a coincidence that he has a much easier time saying "no" than "yes?" I don't know.

As for the update, this is all I got...

Trevor's speech is improving a ton. And by that, I mean he's saying a whole bunch of words that generally don't make sense. When you ask him a question, he thinks for a minute, mumbles something that sounds like it could be a word but definitely isn't in the English dictionary, realizes he didn't make sense and then repeats in that order. Although, he has taken me by surprise with random bursts of sense-making sentences, like "I don't really care," "Damn, that's good," or "I'll take either." The brain is a crazy thing!

Trevor's walking gets better each day, with more control and weight-bearing on that right leg. The physical therapist wants to order him a $1,000 ankle brace, but I'm convinced he'll be walking on his own by the time the brace even ships.

The doctor injected Lidocaine in Trevor's right arm in hopes that it gives his arm the same reaction as it did his leg. Good news is the doc didn't mess up and inject it on the wrong side again. Bad news is Trevor got so light-headed and green at the gills that he nearly passed out.

Here's how the two minutes of speech therapy that I sat through went today:

Michelle: Trevor, what would you sew a button on with?
Trevor: School, spoon, knife, uhh..
M: Nee-?
T: Needre [in an Asian accent similar to the stereotypical "herro prease" or "raugh out roud"]

M: What would you use to wipe up a spill?
T: School, spoon...

M: What would you use to start a fire?
T: School, knife, moo.
M: Ma-?
T: Mattress, match...

M: What would you use to cut grass?
T: Charge, spoon...
M: Mo-?
T: Ped, moped, school...
M: Lawn?
T: Mother, mower.

M: What would you use to measure how tall someone is?
T: Melakin.
M: A tape -?
T: Medicine, school.

Tomorrow will be the one-year anniversary of Trevor's first brain injury and the two-month anniversary of his second (and hopefully last). You think this calls for a celebration? If so, I think I'm going to blare the song 'It's my party and I'll cry if I want to' while bawling my eyes out in the corner of room 2613. Party on!

Thursday, March 31, 2011

The book My Stroke of Insight, by Jill Bolte Taylor, is one that all of Trevor's friends and family should consider reading. It's about the eight-year recovery of a brain scientist who goes through a serious stroke. Sounds boring, I know, but it does a great job of explaining what the patient is going through, even when they can't express their feelings.

According to Taylor, here are 40 things brain injury patients need us to understand most during their recovery:

"1. I am not stupid, I am wounded. Please respect me.

2. Come close, speak slowly, and enunciate clearly.

3. Repeat yourself—assume I know nothing and start from the beginning, over and over.

4. Be as patient with me the 20th time you teach me something, as you were the first.

5. Approach me with an open heart and slow your energy down. Take your time.

6. Be aware of what your body language and facial expressions are communicating to me.

7. Make eye contact with me. I am in here—come find me. Encourage me.

8. Please don't raise your voice—I'm not deaf, I'm wounded.

9. Touch me appropriately and connect with me.

10. Honor the healing power of sleep.

11. Protect my energy. No talk radio, TV, or nervous visitors! Keep visitation brief (five minutes).

12. Stimulate my brain when I have any energy to learn something new, but know that a small amount may wear me out quickly.

13. Use age-appropriate (toddler) educational toys and books to teach me.

14. Introduce me to the world kinesthetically. Let me feel everything. (I am an infant again.)

15. Teach me with monkey-see, monkey-do behavior.

16. Trust that I am trying—just not with your skill level or on your schedule.

17. Ask me multiple-choice questions. Avoid Yes/No questions.

18. Ask me questions with specific answers. Allow me time to hunt for an answer.

19. Do not assess my cognitive ability by how fast I can think.

20. Handle me gently, as you would handle a newborn.

21. Speak to me directly, not about me to others.

22. Cheer me on. Expect me to recover completely, even if it takes twenty years!

23. Trust that my brain can always continue to learn.

24. Break all actions down into smaller steps of action.

25. Look for what obstacles prevent me from succeeding on a task.

26. Clarify for me what the next level or step is so I know what I am working toward.

27. Remember that I have to be proficient at one level of function before I can move on to the next level.

28. Celebrate all of my little successes. They inspire me.

29. Please don't finish my sentences for me or fill in words I can't find. I need to work my brain.

30. If I can't find an old file, make it a point to create a new one.

31. I may want you to think I understand more than I really do.

32. Focus on what I can do rather than bemoan what I cannot do.

33. Introduce me to my old life. Don't assume that because I cannot play like I used to play that I won't continue to enjoy music or an instrument, etc.

34. Remember that in the absence of some functions, I have gained other abilities.

35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.

36. Call in the troops! Create a healing team for me. Send word out to everyone so they can send me love. Keep them abreast of my condition and ask them to do specific things to support me—like visualize me being able to swallow with ease or rocking my body up into a sitting position.

37. Love me for who I am today. Don't hold me to being the person I was before. I have a different brain now.

38. Be protective of me but do not stand in the way of my progress.

39. Show me old video footage of me doing things to remind me about how I spoke, walked, and gestured.

40. Remember that my medications probably make me feel tired, as well as mask my ability to know what it feels like to be me."
(Taylor, 193-196)

I think, but obviously have no idea, that the majority of these are extremely applicable to Trevor's recovery. To me, one of the most crucial ones is the 21st. He absolutely hates being spoken down to, or babied. He's a grown-ass man for goodness sake! So don't act like he's not there and don't talk to us like he can't understand you. Because he can. He gets it.

Also, the 37th. Trevor may not be the snowboarding party animal that he used to be, and I hope to God that he isn't, but that doesn't mean we can't appreciate him for the person he is. Don't encourage him to do anything that will kill anymore brain cells; he doesn't have any to spare at this point. Enjoy the time you have with him. Watch a movie with him. Talk to him about your day. But don't talk about how you're going to go snowmobiling and to the bar when he's better.

There's no way any of us can know exactly what's best for Trevor, but it seems like Dr. Taylor has it spot-on...